The Truth About My Battle With IBD And How Hard It Is

When you have a chronic illness such as Crohn’s disease or ulcerative colitis for such a long time you begin to want a change – and a normal life. When so many of your days are filled with sickness you want to relish and live in the moments that you aren’t sick or at least can fake not being sick. This is what I do so much of the time because no one wants to be sick.

At times I’ve been told that I don’t share enough of my hardships with Crohn’s disease and that I spend too much time-sharing how I live a normal life or at the very least how I portray myself having a normal life. In reality, life is nothing but normal, with my Crohn’s affecting me on a daily basis..

For me acting normal is a way for me to feel like a regular part of society but if I told you the truth and gave you some examples of how I fight you would see that even if someone looks healthy and does many things a healthy person would do, it still doesn’t mean life is good. In reality I’m battling constantly just so that I might not miss out on one chance to make a memory. My Crohn’s has kept me from doing so much and when I have the chance to say “yes” to something, I will do it so as to not miss out, even if it means I will pay the price for pushing my body after.

A good example was this past summer when my girlfriend and I went on a spontaneous trip to Toronto. The trip was great and it was good to get away from my regular scene but it still came with its hardships and I knew that after the trip my body would feel it. We walked all over the city for two straight days — not a big deal, right? For someone like me, it was tough. By the end of the second day my rectum was in horrible shape. The scar tissue from past surgeries was inflamed and the pain was constant. Sitting down became torture, especial one day when we ate outside and I had to sit on a wire patio chair.

We still had one more day to go and the plan was to see Niagara Falls on the way home, on top of the eight-hour drive home. The minute we got there I saw we would be walking even more. The parking lot was about two miles from the Maid of the Mist boat tour entrance. So what did I do? I grit my teeth and dealt with the enormous pain I was in. On the way back I had to tell Lisa that I couldn’t walk at full speed due to the pain. On top of the agony I was feeling, I was draining like so many other IBD patients suffer with. This wasn’t just your normal drainage amount; this was the type that makes a male IBD patient wish that he had a maxi pad with him. Needless to say the walk back was slow, steady and filled with pain but we made it!

This is a classic example me acting like I’m living a normal life but in reality not. My life is anything but normal. This kind of stuff happens all the time. There are days when I have to say the same thing about walking around our local mall since I need to take it slow. Other days I may go to the gym but I’m still favoring areas of my body, making sure I only do exercises that won’t bother an area that is already aggravated.

I know life isn’t that bad if I’m walking around Niagara Falls, traveling to different cities or skiing, but you can only enjoy something so much when you know there will be consequences. A good example of this was when I went skiing over the past couple of weeks. While I was able to have a good time, I paid for it and the end of each and every day. My rectal area and areas of my stomach that have scars were hurting terribly. I wasn’t able to ski the same way since in the back of my mind I was protecting my body the entire time, knowing that I would regret what I was doing at the end of the day.After each day of skiing I had to take a very long Sitz Bath in my hotel room and I even brought my Sitz Bath from home to make sure the option was there if I didn’t have a tub to soak in. When I got home after the trip, my surgeon had to lance an abbesses from my rectum and put in a seton because of what I had just done. I wanted to feel normal and ended up putting myself in a situation I knew my body couldn’t handle.

So even when you see me doing certain things, when I’m skiing and looking well, when I’m traveling or even when I’m just out to dinner, the reality is that I’m not well. I’m battling just like everyone else with Crohn’s disease or ulcerative colitis. I’m just craving the normal life that those without a chronic illness have – seems I will do almost anything to feel normal.

3 thoughts on “The Truth About My Battle With IBD And How Hard It Is”

Awesome post, I appreciate your honesty and this sums up so much of what I’ve been struggling with. People see you one minute and think you are well in a picture or something. No, but we do need to have some sort of quality of life, make some memories, but it never goes away and what they see isn’t in that great snapshot of your trip or visit with your friend. Thanks for the article.

That sums it up. I’m so tired of missing out on everything. When I’m feeling good I usually over do it instead of walking two miles I will do more not thinking about the price I will pay later. I want to run with my dog in the morning but if I do that will I function for the entire day. I had my 3rd surgery last summer, I was hoping to feel a lot better. I miss most the activities with friends, family. Thank you for sharing Brian..